A tale of two ectopics

Firstly, I want to thank Sophie for inviting me to share a bit of my story. I have found so much compassion, strength, love and support in the online community. There is so much power that comes from sharing our stories and uniting through our challenges that I hope, my story can help someone else.  

I trained and qualified as a midwife years before trying to start my own family. Never did I expect to have difficulties (like a lot of us!) and I didn’t expect to go down the path that I did. But that’s what happened, and it has changed me forever.

My husband, Andy, and I were one of those couples who decided to have a baby when it was going to suit us and thought ‘poof’ pregnancy and baby. First time around we conceived after four months (I had just turned 35) which we know and appreciate is quick. I got to 7+1 in August 2018, and that day would become one of our worst nightmares. While at work, I suffered with a ruptured cornual ectopic pregnancy (a rare and very deadly type of ectopic pregnancy). I lost our baby, my left fallopian tube, and almost my life. When you have a medical background, you don’t need to know much detail about what happened to know how close to death you came. I also found it very hard to grieve for the loss of our baby when I was grateful to be alive – it’s taken a long time to come to terms with and process this. 

I am very grateful that I have the access to a generous sickness policy that allowed me the time and space to recover physically from the experience as well as emotionally in preparation for returning to the maternity unit looking after women in pregnancy and with their newborn babies. I can remember being asked so many times by couples on my return “Do you have any children?”. The first time took me very much by surprise, even though I had been asked many times in the past. But on my return to work, it just seemed to be happening more frequently – one couple even asked me twice which was upsetting at the time. I learned my autopilot response “Not yet…” was the easiest way to deal with the question and protect my broken heart. Being a midwife is an incredibly difficult profession to be a part of when you are suffering through pregnancy-loss and infertility. Work is normally a source of distraction for many, but it was almost a punishment and no matter how well I was doing at trying not to think about it, it was in my face every day, all day with no end in sight. Hearing about the surprise babies, the not-wanted babies, the 8th baby when I couldn’t manage to get one, really wanted baby was so incredibly hard. But I had to come to terms with the fact that the world wasn’t going to stop spinning, and babies weren’t going to stop coming just because I was struggling. This mentality also helped when hearing about all my colleagues who fell pregnant the years following my losses who are now at home cuddling their babies as I type this. 

After 6 months of trying with one tube, I had a procedure (HyCoSy) to check my remaining tube was open. Both the right fallopian tube and ovary were seen during the previous ectopic surgery and reportedly looked healthy. So was relieved to find out my tube was patent and flushed quickly during the procedure. But with my age, some other medical factors and my increasing anxiety about fertility, Andy and I decided to look at our options for private IVF. We started our IVF (abroad) in May 2019 and were lucky to have a good response to the process and had a 5-day hatching blastocyst transferred and two more embryos to freeze. 

We were so thrilled when we saw those two lines on the pregnancy test 9 days after transfer. But the fear and trauma from the previous experience was very real too. Sadly, the element of joy was short-lived as two days later I bled for 48 hours and then it stopped suddenly – about the length of a short period for me, so I put it down to a chemical pregnancy and laid in bed and cried for those two days straight while I bled. For some reason I kept testing over the coming days and noticed the line wasn’t getting lighter. So, I had my HCG monitored which while starting low, was doubling accordingly so I was booked in for an early pregnancy scan at my EPAU at 6 weeks. On the day of the scan, my uterus was empty with a thin lining. No sign of a baby – anywhere. Pregnancy of unknown location diagnosed, and my HCG was still doubling (suggesting an ongoing pregnancy somewhere). I knew where this was going. I was admitted overnight because I was petrified of rupturing at home. A repeat scan the following morning located our little baby in my remaining tube. I was devastated but also angry that despite the embryo being placed in my uterus, it still managed to go up my only tube!! Suffice to say, I did not want that tube anymore and as I was not a candidate for methotrexate for management, I had surgery that lunch time and was discharged home to my own bed at 19:30 with pain relief. Three and a half weeks later I would start experiencing pain and still having strong positive pregnancy tests. My HCG was checked and was still too high that long following surgery. I was diagnosed with ‘persistent trophoblastic disease following ectopic pregnancy’ and was treated with methotrexate which worked, thankfully. 

Following my recovery, our last two embryos from our round of IVF were transferred separately and were unsuccessful. This is when I hit a mental rock bottom. I went to work on the official test day of our last embryo – I had been testing early and knew it was going to be negative so I thought I would be able to cope with being at work. But I fell apart and had to be sent home. In my mind up until that point, I had embryos, therefore I had hope. Now all my hope was gone along with my embryos. The future looked bleak and I couldn’t see a way out of this nightmare. 

I went to my GP and asked for help with my mental health for the first time in my life. I knew that I had reached my limit. I felt so sad and I was crying all the time and I didn’t like who I was anymore. I couldn’t think about anything other than our losses and what we still wanted and yet were so powerless to make happen. I felt so isolated from a lot of my friends because I felt like no one understood how it felt to be me. No one had gone through what I had, and I didn’t know anyone who had. Not only that, but a lot of them have children and busy lives, so seeing people face-to-face became harder because as usual, I would be the only childless one there. My family are in Australia, so that was also hard because as all our money was being thrown into fertility treatment, it meant there was no money or date/trip to Australia on the horizon (which normally helps with the homesickness). It felt like infertility was consuming and dominating all aspects of life, but what do you do when fertility treatment is so time-sensitive?! It’s so hard mentally and this is why I think unless you’ve been through it, you won’t ever really understand the full extent of its impact (on life, relationships, your career) and the complexities involved – mentally, emotionally, financially. It’s not possible to go through this trauma and not be changed by it forever. 

For those who have experienced a pregnancy loss, please know that you are not alone. No one can guarantee you that brighter days will come, but please try and hold a little hope inside for yourself that they will indeed come. If you need help to cope or support, please don’t feel ashamed or suffer in silence. What you feel is real and important.  A loss is the loss of dreams and a life you had envisioned for you, your baby and your family. Not being able to get pregnant is also the loss of these dreams. 

I also want to acknowledge the many strong, resilient, passionate, creative and brilliant women and men I have met so far along the way on this fertility road – you are all champions and we are in this together!

Important sources of information and support in the UK:

IAPT Services in your local area

Leanne Spencer
September 2020

Following a further round of IVF once clinics reopened, we were lucky enough to have success and are currently expecting our rainbow baby. While this is everything we have hoped for, the experiences of the past will never be forgotten. 

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